Just shy of one week from hearing the news that Benjamin's cancer had shrunk and that the LCH was not metabolically active we received the call that would shatter the bubble of positivity that we'd been living in.
It was the morning we were slated to begin Maintenance that the hospital called to reschedule Benjamin's appointment for the second time. We were originally due to begin on Tuesday morning, then Thursday morning and on this call we were asked to come in for 3:30PM. Something wasn't sitting right and we asked to speak to his nurse or his oncologist. David was put on hold and fifteen minutes later, while he waiting on the line, the oncologist phoned me.
He told us that he had delivered last week's good news after reading the radiology report but before speaking to radiologist. After they connected, the radiologist confirmed that the PET scan showed that Benjamin's LCH had mild activity whereas we'd been told just six days prior that his cancer was not metabolically active. It was quiet on our end of the line as we tried to process the words we'd just heard. Needless to say we were devastated, confused and angry. This seemed like such an unnecessary miscommunication and we were already dealing with so much.
He went on to ask us if the rough, blotchy skin on Benjamin's cheeks had improved at all over the course of twelve chemotherapy treatments. I confirmed for him that in my opinion it had not. I could feel my own cheeks get hot with anger. This had been part of every weekly physical exam performed on Benjamin. I had taken photos of his skin every few days to document it, why didn't they? Why wasn't this noted in his chart? Why was I being asked to confirm this, especially after we'd been informed weeks ago that Benjamin's LCH had been re-classified from multi-system (bone and skin) to single system (bone only)?
The questions, as we knew them to be at this point in the day, were:
How many systems were affected by the cancer (skin + bone or skin only)?
What did the activity shown in the PET scan mean?
Determining the answers to those questions would be attempted by Benjamin's oncologist, his two LCH oncology colleagues and presumably some additional medical experts during rounds which would take place later that afternoon.
We were told that depending on how the discussion during rounds went we could be looking at changing Benjamin's course of treatment. This could mean that we would not be graduating to Maintenance as we'd been told we would. Treatment may not be a third round of Induction. We may be going proceeding with something entirely new that we hadn't ever discussed. While I do understand that nothing in medicine is 100% guaranteed, we had been given clear results, clear next steps and since then no new tests, exams or scans had been done to reveal any new information.
Prior to rounds, we were asked to come in that morning to hopefully get some time with the staff (lead) dermatologist to get a professional opinion about the skin issue we were facing. Of course I was wondering why this referral hadn't been made sooner as Benjamin had been treated weekly since January 20th, 2022.
As we traveled to SickKids we didn't say much about what the doctor had told us over the phone as we didn't want to worry or upset Benjamin in any way. I tried my best to point out things we could see outside the car windows that would excite him, like the library he'd visited on a class field trip and the CN tower. This distraction tactic was as much for David and I as it was for Benjamin.
After a brief recording of Benjamin's stats and measurements in the Orange Pod with his nurse, she asked me how he was doing. I responded that he was doing well, all things considered. She then asked me how I was doing. I responded with just two words: "Pissed off." She nodded empathetically.
We were lead to an exam room to wait for the oncologist. When he came in he explained the confusion around the PET scan results. As I understand it, when reviewing a PET scan the first metric that is examined is called SUV which is a degree of light. This is then compared with a second metric called the liver background. When the SUV value is less than the liver background value, as is the case with Benjamin, the result is interpreted as non-active.
Where things get complicated is with a third scan element called blood pool. It is the opinion of the Nuclear Medicine doctor that reviewed Benjamin's scans, that the value of the blood pool would need to be lower for him to consider his LCH to be non-active. What makes this difficult is that Benjamin's oncologist and at least one of his LCH oncology colleagues whole-heartedly disagree with the opinion of the Nuclear Medicine doctor. The LCH oncologists believe that the blood pool value is higher as a result of the healing of the bone that is taking place, not a result of active LCH. So, who's right? The short answer is there's no way to tell.
After this conversation we were left to wait in the exam room for the dermatology resident as the the staff dermatologist wasn't available that day. Her exam of Benjamin was thorough as she looked him over closely from head to toe. She took extra care in looking at his scalp, where there'd been a quarter-sized patch of dry skin that completely cleared up throughout his two rounds of Induction, which is the expected response if skin is affected by LCH. It would be extremely rare for any LCH-related skin issues not to resolve after not one, but two, Induction rounds.
She also took great care in looking at the redness and the roughness of the skin of his cheeks. She patiently reviewed the ten photos I'd pulled of Benjamin from the time he was a month old until recently, showing that he's always had this skin condition that's now up for debate as to whether or not it's LCH-related.
Before leaving us to discuss Benjamin's case with the staff dermatologist, the resident gave us her professional opinion which was that this was not likely to be LCH-related. Her thought, given our family history and heritage was that this was more likely to be Rosacea or Keratosis Pilaris (KP).
She did caveat that there was still a chance that the staff dermatologist may disagree if, for example, she'd ever seen a case where LCH had presented similarly. If that were the case, the recommended next step would be to have Benjamin undergo a second biopsy where two round 3-4mm samples would be taken from his face. These would likely entail scarring as stitches would be required which was the least of our concerns. Another biopsy means more general anesthesia, signing another waiver with scary wording about the possibility of fatality, another surgery, etc. Seriously, hasn't this child endured enough?!
While she was gone we had to remind ourselves that they hadn't said that he would need a biopsy, just that he could need one. When she returned she explained that both she and the staff dermatologist agreed that the condition presenting on Benjamin's cheeks was not LCH-related. Instead it was their expert opinion that he had a specific type of KP known as KP rubra. This was good news as this condition is harmless and Benjamin would not require a biopsy. As a precautionary measure, he will have a follow-up appointment with the staff dermatologist in mid-May.
Before leaving the room, she handed us a print out about KP and provided us with some sunscreen recommendations that would be unscented mineral ones and that wouldn't be absorbed by his body. Aveeno, Green Beaver and Coppertone were a few of the brand names that made the list.
The oncologist and fellow entered the room a short time later to let us know that the next step would be for them to discuss Benjamin's case at rounds that afternoon. They promised to call between 4PM and 5PM with an update as to what they'd collectively decided would be the next course of treatment.
At home, the afternoon dragged on at a snail's pace while my mind did quite the opposite. My brain was working overtime, running through every possible scenario that had been discussed but somehow always coming back to words the oncologist had spoken earlier that day that had rocked me, something along the lines of, "We may need to look at a different type of chemo but we won't discuss that until we have to".
Mimi arrived at our house at 3:15PM to take Benjamin on a walk to pick up Ella from school. Thank goodness for Mimi! I can't imagine the added stress and anxiety of possibly getting the call from the oncologist in the schoolyard. I didn't think I'd have it in me to be able to keep it together if the news wasn't good.
Thankfully the call came while Mimi and the kids were out of the house so that David and I could really focus. Given the nightmare roller coaster ride we'd been on that day, the news was the best we could have hoped for. As of early next week Benjamin will be graduating on to the Maintenance phase of treatment. Before then we can expect to hear which group he'll be randomized to for the trial.
While we were headed in the direction we'd been hoping for, we now knew of the opposing interpretations of the PET scan so we knew the news couldn't be as good as we'd gotten the previous Friday evening. Sadly, we'd been robbed of that feeling. Something that could have been avoided had the doctors aligned before sharing anything with us. Getting great news, then having it taken away only to be left in limbo until it was sort of given back was indescribably hard. It left us feeling like we'd been (unintentionally) toyed with. We certainly understand not wanting to sit on good news when you know a family is on pins and needles waiting, hoping for just that but due diligence should have been done.
I've said it before and I'll say it again, while the overall prognosis for Benjamin is good, it's clear that our road is going to be a long one with lots of ups and downs, one without any certainty. We give our best effort to stay positive but days like these make it especially difficult. Thank goodness for Benjamin's ever-glowing light because when things feel dark, perhaps unfairly so, we look to that to spark and it keeps us going.
Comentarios